Flutter, In Out: Epilepsy

I sat there watching it flutter ever so slightly… up, down, up, down… Brief inhale, long exhale. Quick to capture the air, slow to let it go. So soft and sweet I almost held my breath for fear the motion of his chest would stop. All would be paralyzed. I’d panic. Remember to beat, my heart.

I always search for that panic every time I check on him each night. The second, the third, the fourth time, before I finally feel reassured enough to pray for my own steady inhale and exhale. I sit on the edge of that bed, morbidly sometimes, wondering if one time I’ll hear that first sharp, painful inhale and hissing, heaving exhale I’ve come to know so well. That I breathe… Far less peaceful, much more labored. Terrifying. You never want that for your child… The pulsing, the heaving, the pressure, just about to burst… So much activity despite being paralyzed- helplessness.

I know he’s okay. Deep down I believe it. But I always wonder… I wonder about the 1 in 26. I wonder about genetic epilepsy. And I wonder whether I will be the one that eventually can’t protect him from that which I can’t protect myself. Sounds so dramatic.  And yet nothing is more dramatic than not being able to govern your own life. Choose your way, when supposedly all you have before you are open doors and big dreams.

At some point, I stop staring at that perfectly curved nose, plump lips, rosie cheeks, and lean over such a sweet little face to put my ear to his nose. Seeking tangible proof there is indeed breath behind those ins and outs. Small lifts of his chest, peaceful as he sleeps. What a gift. The gift of health.

And last night I sat there, for the second time, a bit longer than usual, reflecting on an earlier conversation with my Dad… And he made what might seem an incredibly simplistic and obvious point, but one I’ve never really grasped in trying to educate others about epilepsy. In trying to create the urgency so many lack. He simply said to me – it’s about fear. It’s about being fearful it could happen to oneself or someone one loves. So true. So obvious. So missing in those without a chronic illness like epilepsy.

And I realized, the reason I sit by my son’s bed the second, third, fourth time each night is not just because I’m a mother but because I have fear he will become me. Fear that precious little body, whether it be today or 20 years down the road, will live the nightmare I live. That I will have given him that nightmare. Because he is not exempt. I never knew it, but I wasn’t either.

I wasn’t exempt; I was oblivious.

Until it hit me. Until I was in a doctor’s office and he told me the incredibly strange and painful “thing” my body kept repeating, would continue and I was now diagnosed as epileptic. And I sat suddenly suffocated by those four white walls, the small dimensions of a sterile environment, feeling lost, exceptionally alone, and alienated.

Shock. Panic… Fear.

And that’s it; Dad’s right. So many don’t fear, have to take action, are not paralyzed, and so the disease “disappears.…” Ignorance, what a disability that can be.

I guess fear can inspire the notion of being “paralized” in two ways. One, you become frozen. Intimidated. Sitting in the dark, waiting for those peaceful inhales and long exhales to become heaves and hisses. Or, two. You run, leap, push to paralyze something other than yourself. You take fear and you resist it and you vow to beat the sh*t out of it – that which you fear… the disease. The diagnosis. Epilepsy and those four walls.

Fear paralyzes me at the edge of my son’s bed every night; I let it rob my breath until I hear the steady pace of his. But I find myself, in the dark, vowing to paralyze one day the disease associated with my paralysis. One day to sleep softly- breath a rhythmic peace. Unfettered. Whole.

So when you tuck your babies and children in tonight… when you pull your husband’s arm tighter to your chest as you curve into him… when you stare at your wife’s face relaxed in sleep, softly upon a pillow, treasure the fearless ease of one’s breath.

Sacred. Free…

Not the 1 in 26.




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